Our Elephant Named Autism

Thursday, 9 July 2015

I dashed off from rainbows with Melody in tow, rushed through the front door, past the police without so much as a greeting and held her. She shrugged me off looking annoyed. She was playing on her iPad and clearly I'd disrupted her. I was trying my best not to cry in front of the children but I could feel my chin quiver. If I'd not been sat next to Ginny I'm sure my knees would have buckled there and then. My heart was still pounding out of my chest and I had to remind myself to breathe before I'd pass out. She wasn't a teenager feigning indifference. She genuinely had no idea how upset I was. She likely had no idea why I would be upset at all.

I swapped out the prescriptive shades I still had on for my normal glasses, took a deep breath, a hand still on her impossibly skinny knee and tried to smile. I tried to smile but I'm sure I failed and I looked up at the two officers and finally spoke. I asked them to please tell me everything. How long was she gone? Where was she found? Is there seriously no way local shops could hold on to my details in case anything like this ever happened again? Again? I stopped and thought, when had the picnic been? Less than a week ago? She's getting more daring. Getting more daring or my mom really doesn't get the extent of just how vigilant she has to be with Ginny.

I can't look at my mom. I fear that if I do I will grab her, in front of the police, and choke her. She tried to say that Ginny must have got into our new neighbours garden and that our new neighbour must have let her out. I don't understand how she can flippantly try to pass the blame but I suppose that makes it easier. I let out sound, not quite a laugh, not a sigh. I say that Ginny is more than capable of scaling the tall back fence, that she's even managed the anticlimbing specialist fencing at school in the past. I say, look out side, she could use and corner any grip, pull herself onto the wendy house, stand on the gate handle... I regain my focus. There is no point in listing off all the things I see that can facilitate her escape. I know them like the back of my hand. The things I see wherever I go that no one else seems to. The things Ginny can and will notice, the vantage points.

I ask what she was doing on the garden on her own anyway and my mom tells me shed left the small window in the living room open because of the heat which makes sense, both because it was hot and that's the window I'd have opened and because Ginny can easily pop through it, what doesn't make sense is why she was able to get to it. I ask where my mother was and she says making the girls dinner and that Ginny was in her room on her iPad. A touch of the tightening on my chest released. I immediately identified all the errors, errors made by someone that doesn't know what Ginnys like.

First, though she had an excellent reason for being in the kitchen she'd left the small window in the living room open. That, in itself, was not the main issue, the issue was that she left the window open and didn't not take Ginny into the kitchen and sit her at its table. Alternatively if Ginny desperately wanted the solace of her room than either the window should have been locked or the catch over Ginnys door should have been slid over. I don't like the idea of Ginny being locked into her room while she's awake. This why we have catches on all of the inner doors so that all bedrooms and bathrooms that are not being occupied can be locked instead, denying her access to places she shouldn't be unaccompanied and giving her the freedom to come and go to and from her room, but this would have been an appropriate exception. It was hot and 15-30mins locked in her room while mom made her dinner would have been acceptable by my standards. A further alternative would have been to take Ginny's bedroom fan and place it in the living room with the window locked.

I do not know if any of these options had crossed my moms mind at the time. If she'd shrugged them off and considered them unnecessary precautions or if genuinely it just didn't occur to her that something like this could happen. Her voice sounds so calm as she continues talking, I no longer hear her, suddenly want to throttle her again. How can she seem so calm? I then consider the fact that I collected Melody from Film club at 4:25 and then walked her to Rainbows where I'd volunteered as mom was over to help with the kids for the summer so that I could do such things. I have no idea what time it is now but rainbows finished at 5:45 and I have no idea when all this happened or how long Ginny was missing. I remember how the minutes felt like hours when she'd escaped the picnic and my chest tightens further.

I squeeze Ginnys knee, bite my lips together and look up at the ceiling to keep my chin from quivering again. Isa and Melody are watching TV so the restrain is not entirely necessary but I can feel that if I allow myself this tiny gesture I may unravel entirely. I suddenly feel the weight of James being away and wish he were there next to me, his big arms around me, the smell of his skin, reassurance. If James were here everything would be okay. If James were here though this wouldn't have happened. At least that's what I think but it could have, he tells me later on the phone from Alicante that it could have. I don't know if it's true. It feels impossible that anything ever could happen with James around, he makes everything feel safe.

The policewoman asks questions and takes down details, has me sign something related to media as mom had of course given them permission to alert them and the policeman is full of reassurances. He can obviously tell how upset I am so he tries to make me feel better between answering my questions. They'd called in everyone from St Albans, so there were a lot of people looking for her. She was in just a nappy and climbing into and out of people's windows, but we live in probably the safest town in Hertfordshire. She was gone approximately 25minutes, but the helicopters were out looking for her. They'd had to check all of the rooms and cupboards as children had been found at home hiding after hours of searching, but that hadn't been the case here. She was found at the pub stealing meringues, she'd stayed local which was good. Oh, and of course, didn't I have such lovely children. Isa had apparently been most entertaining before we'd arrived and informed them that she wanted to be a knight which they both agreed was pretty awesome and Melody was calm and polite, obviously taking in the gravity of the situation.

They took me into the kitchen for a word and I immediately thought oh my goodness the nappy delivery! The nappy delivery of three months supply had arrived and we'd been putting them away but the boxes hadn't been broken and put in the recycling and the dishes were in the sink and not the dishwasher! My horror must have been conveyed by my expression because the officer immediately said that they in no way thought that this was a case of neglect, that Isa and Melody were a credit to me and that Ginny was obviously quite an escape artist. I told them about the all the upset last summer about the catch on Ginny's door and they said they could not believe that social services have me grief about it because it was more than obviously needed. They asked if I was okay and if I was getting enough respite, as most people do they wondered out loud how I didn't receive more support. An officer told me that when they left they wanted me to have at least a glass of wine, and that if anyone said anything to say the police said to. This genuinely made me laugh and I asked if I could have documented written proof and then I thanked them and they left.

I shut and locked the door, reflex as usual. Lent my head against its cool glass and took a deep breath. I didn't know if I could manage a drink, I felt sick. The girls were receiving badges when I received the Facebook call from my mom telling me what had happened, I'd felt like being sick on the spot, I'd restrained and was passed over to a police officer who'd told me to relax, that Ginny was safe and back home and that they would be waiting for me when I got back. I hung up and could feel my head whiz. A familiar face appeared, a friend had run over to tell me what had happened and is told her I'd just received the call. I couldn't smile as Melody was handed her bage. I couldn't join in for the rainbows song and had to step back. I grabbed Melody as soon as it was over, did not say goodbye to anyone and hurriedly explained what happened. She understood and rushed home hand in hand. She is such an amazing child. I realised now, head still on the glass, that it was her last session until the fall. I also realised I'd the officers' names had gone completely over my head. I felt guilty that for all their efforts and the work put into bringing my Ginny home I hadn't even had the decency to shake their hands and retain the knowledge of they names. I lifted my head from the glass, arranged my face a mask and walked back into the living room.

Ginny was still not interested in a hug from me and that hurt. I checked the time and decided to run the bath. It was bath night and I thought I'd get in with the girls. I ran it cool as the day was hot and washed us all. My mom got them all into jammies and I only managed 4pages of Harry Potter before I had to apologise and tell melody we would read at least a chapter tomorrow. She got a school book and told me she would read a bedtime story, angel that she is.

I walked downstairs with Amber and poured the wine that had been prescibed. It was cool and sparkling, the bath had lessened my nausea and I tried to remember if I'd had lunch. I couldn't remember but I also couldn't be asked to cook. I took a sip of my wine, refreshingly cool ad sparkling, and decided on delivery. Pizza or Chinese was the question, I was in the mood for pizza so naturally I went for Chinese instead, overriding my craving. I sat back on the sofa watching Amber attempt to crawl and then watched eastenders, in shock by how the world just kept on while I still felt my insides shake. While I was still full of unanswered questions. While I wished our elephant would leave us so that I could meet Ginny. Meet my little girl trapped inside that little head, behind that gorgeous face, hidden.

As it all crashed into me I felt a sudden rush of tiredness so Amber and I went up to bed. Amber was already asleep and I followed shortly after. Unfortunately I then proceeded to wal at 1:25am and am still now awake at 5:04. In the last hour I decided I needed to write and now I'm hoping that I'll manage an hour or two.

Monday, 22 June 2015

Father's Day was never a particularly pleasant time for me. When I was 9 it was the day that my dad left. It feels strange to try to call him that. Even before he was gone he never actually seemed very present. He'd never laid a finger on me but his stream of broken promises, glimpses of aggression and bullying of my mother, and indifference towards his children unless on display, would never be forgotten. I used to wonder how different my life would've been if he was. What my life could have been if my parents were less wrapped up in their own lives and more present in that of their young children. What it could have been if I they had noticed. I wonder if anyone ever did notice the abuse and just chose to ignore it. Maybe it was why I wasn't important to them?

My 'dad' was never really there for me so his leaving on that particular day didn't hurt the way it should. It was just another let down. My future experiences of father figures didn't improve anything. If things had been bad with 'parents' present and a supposed 'unit' it could only get worse without that false sense of security. My parents' divorce only amplified their desires to live for themselves and find their own happinesses so their neglectful eyes only dimmed further. As a result, I had a long list of things I'd never want my own children to be subjected to, along with disappointments I would avoid at all costs. I suppose it's what made my decision to be a single mother such an easy one, but even estranged parents can let you down.

I was just a girl when I'd discovered I would become a mother. No surprise really, considering I'd left home at 16 attempting to tear away from my broken childhood. I don't even know if broken is the right word for it. Broken doesn't seem to sum up just how fractured, splintered, and destroyed it seemed at the time. Destroyed. My life had been destroyed.

What it is about the innocence of a child that seems to draw in the lowest of filth to destroy both who they are and all that they could be? Leaving nothing but a sense of failure, shame and guilt. Guilt. A child should never have to feel guilt but when you can not make sense of why things always seem to go wrong you naturally assume a sense of guilt. It can not be world that has let you down time after time, for no apparent reason. It must be something wrong with you that makes the darkness follow, and follow me it did.

That's not to say that there were not kind and caring people in my life. I know my mother loved me but she had fallen into her own life in a way that she seemingly could not control and at 45 she sought to regain her lost years, but where did that leave me. My feelings for her are ambivalent. There is no doubt in my mind that I love her very much but I also resent her terribly. Somewhere between my turning 5 and 10 the incredibly caring and doting mom I started out with disappeared, even if she was still physically present. Years later she resurfaced and has been a brilliant grandmother and cared for me after my spinal injury.

I also had friends. Some friends that I can still talk to when need be though many of whom i seem to have misplaced along the way. I also had a boyfriend who, though controlling, had a good heart. However, if I'm honest as I reflect on my past, was more an escape from the life I had than a genuine relationship. He had a support network and family that I could only wish for. Wish for, because deep down I was sure a person like me would never have a happy family of her own or people who really loved and cared for her. I was, after all, broken. I stopped kidding myself and spiraled off and away from the false sense of stability he'd temporarily given me. Maybe my parents had had a point, maybe it was time to live for myself and find my own happiness.

I was not a happy person. When I found out I would be a mother I can remember the panic attack. The scramble for my inhaler and the clicking of realization as I realized my baby would be born before I would finish my AA and start BS. Once my breathing settled I turned to the boy I should not have been dating and all I could see was that we were in no way right for eachother. That I wouldn't want my child stuck in between a relationship in which his/her parents were nearly 'stuck' in themselves. I'd after all experienced what that could be like firsthand and it didn't end well. I would never want to marry this person and I was sure the feeling was mutual. It did make my decision to be a single mother an easy one, but as I said before even estranged parents can let you down.

I hadn't realized that with my own 'dad' because i suppose I hadn't cared. I'd been let down so many times before, but for my child? For my child I could feel the upset. For my child, the most seemingly small and insignificant let downs would tower over any form of abuse I had endured. Even if it was just a missed visitation day. Even if she wasn't old enough to be upset herself, old enough to understand she was being let down, old enough to even remember it in future. Perhaps even more so because of it.

When Ginny was born I felt a love like nothing I had ever known. I knew that I would never be able to just concentrate on myself and search for my own happiness because the only happiness that now mattered was hers. From the very moment I first held her in my arms I knew that I could never place my needs and wants ahead of her own. I wondered how my parents ever could. I imagined it must have been the fault within me. It must have been apparent from the moment they first laid eyes on where as from the first moment I laid eyes on her I knew she was all things pure and wonderful. That she was worth protecting with my own life from everything and anyone.

When I met my husband I could not have possibly imagined my life now. A life so different from the one I'd lived that my former self would not have believed it no matter how hard you tried to convince her. After Ginny I imagined my life just being her and myself. I continued my studies and worked at a sports bar which is where I met James while he was in Florida training to be a pilot. He was attractive, smart, funny, we had chemistry instantly and just sitting beside him made me feel, different. Happy, I felt happy. It was just after Ginny turned a year old and we were engaged 2.5 months later. If I were to say it was smooth sailing from then on id be lying. We had a shakey start but we made it through. Relationships can be tricky enough without throwing an ocean between hometowns. The contrast between Miami and Harpenden was well defined to say the least. A few months after our engagement we also had pregnancy hormones to throw into the mix.

I was used to being let down but I would be damned before I'd let the same be said by my own children. Making it through the hard times was worth the family I have today. James did not let us down. He took up looking after Ginny as if she were his own and as far as our girls know she is. Our girls know they are all equally loved and looked after and they are all four of them, daddy's girls. They do not know that Ginny is their 'half sister' by blood because life has taught me that blood doesn't mean all that much without care and attention so why should they? Our girls are sisters and that is all.

Even though Ginny contracted MRSA shortly after our engagement and had both regressed and been diagnosed before we were married, James was there. I'm not going to say that nothing changed because in fact that changed everything. It felt like my darkness had still found a way to creep up into our lives and get to our little girl. It felt like another way to corrupt the innocent and my guilt had never felt so strong. It must have been my fault. Had I been as selfish as my own parents, who turned inwards in their forties, by doing what I thought was right and having my child? Had that been the wrong decision? Would my child have to pay for that decision with having to live her life in a world she deseperatly would forever struggle to understand?

To say the least I felt the darkness full force and it must have been a difficult time to live with me but we made it through. Our elephant made everything harder but we had each other, we had Ginny and we would soon, did soon, have Melody too. Having Ginny's new beautiful little sister helped remind us every day that we were together because we wanted this family. We were together because we wanted this family, mommy, daddy and girls, happy girls. We would do anything to shelter, and protect them. We would make the best of the cards we'd been dealt and this new darkness would not destroy us. I'd had enough of the destruction in my life and with my new family I somehow no longer felt broken. They had mended me.

If you would have told my former self that she wouldn't finish her degree, that she'd give it up to have a family. Family, a fractured concept to the person I had been, seemingly as unattainable as time travel, I wouldn't have believed it for a second. Not just any family either, my family, my happy family. A family with a husband who worked hard and then came home to help with the kids, not one who threw dishes if dinner wasn't on the table. One who didn't make promises only to break them. One who managed to make it to every delivery and not only drove us home from the hospital but took time off to spend with us. A husband who dealt with the darkness I felt followed me and tossed our smiling girls into the air laughing, shedding light on the shattered person I was, sticking the pieces back together to bring about the person I'd become.

The excited faces on my girls as they planned Father's Day surprises for daddy made every part of my life before them more bearable. My girls are amazing children and my husband is an amazing man. I know that he is everything a dad should be and that with him my girls will never a life anything like the one I had before them. I Love him even more than the day I accepted his proposal, with every day that passes, for it and I know that my girls' love for their daddy only grows as well. I finally have a reason to celebrate Father's Day, a dad worth praising and a husband who is my rock.

Happy Father's Day to the best dad I could have ever wished for for my girlies. I know I don't tell you enough but I love you! Xx

Enter our postcode HP3 8RL and select Apsley Mills. You will be directed to the choices and we very much hope you will choose Woodfield Association School Partners (WASP) for your vote as we are actively fundraising for a new therapy pool. Visit our websitewww.woodfield.herts.sch.uk for more details.

Monday, 15 June 2015

Adverts, everywhere. Warning parents that along with their very expensive tablet computers and mobile phones they MUST BUY the top of the line, creme de la creme, cases to keep these devices safe. They list off special features and impressively state their products are "rugged","waterproof", "shatterproof", "shockproof", "secure", "submersible up to 5.8meters", "military tested", "extensively tested", and/or hilariously "childproof". Well, what about Autismproof? What about Ginnyproof?

Sat in the coffee shop this morning I jokingly stated that my daughter could not only be used to test the security of schools but also to test iPad cases. We have probably spent more than the cost of her iPads(yes multiple as she drowned her waterproof iPad and we had to replace it) on cases that have claimed they could out smart children. Their designers have obviously not come across a child like mine. How dare they claim extensive testing when the extent of their testing clearly has not come close to the requirements to proof against my under 10. My under 10 who has been proving time and time again, since her 6th birthday in fact, that though she has severe learning delays, autism and adhd she can render their safety proofing equipment useless within minutes. Why are companies not seeking out our modern day houdinis to ensure their products are actually worthy of their claims?

Virginia may not conform to standardized testing procedures, rendering her results often to be not consistently reaching the 0-6month old markers in most categories, but that is because if an activity does not motivate her she sees no point in it. Ginny has amazing problem solving skills. Problem solving skills very much above the average though not conventionally.

When parents were pleased about their little ones completing puzzles for the first time I was find places to hide keys so that Ginny could not get the front door open or climb out of the window. When parents put things up on counters to remove objects from the reach of their infants/toddlers, I was finding my 8month old in the top shelf of a book case or that my 18 month old opened the dishwasher door so that she could pull herself on to the counter and lather herself in butter to satisfy her sensory seeking needs. If my neurotypical toddler completes a puzzle I would clap, if Ginny were to complete a puzzle my jaw would drop. If my toddler who was severely hearing impaired for more than the first two years of her life says a new word I cheer, if Ginny did I'd be singing praises for prayers answered.

My expectations for my children very on their abilities, so why aren't these proofing devices catering for children of varied abilities? Why are the cases that are meant to withstand the roughest of children unable to last the placid but dedicated hands of my child? It's not just tablet cases that need to up the bar, my daughter's school purchased incredibly expensive anti climbing fencing for escape artists and one day they thought they'd see how well it would stand up to Ginny. They made sure she was safe and that if she managed to get up and over there was an adult to apprehend her. The anticlimb wall proved not to be Ginnyproof as most things are. Surely "specialist" equipment would undergo more tedious testing then the usual but still it would seem its insufficient.

If everything were actually tested to be worthy of their titles, if preventive measures were made suitable to those who need them most then buying childproofed items would actually mean that children can not get past their safety mechanisms. Child locks on car doors, for example, are in fact Ginnyproof. Ginny can not open a child locked back door though she can climb over all seats and open a front door but that is not something that woul happen while we are driving around. Though, I would not put it past her that if the motivation were there to do so. As I said earlier, Every task depends on how motivated she is. Would she leave a clipped sided Tupperware box untouched on the table top no matter how many times you asked her to open it? Yes, but if you put an iPhone in that Tupperware box she'd have it out faster than you could blink. I wanted even imagine how I myself would be able to manage something that is truly Ginnyproof but certainly there must be someone cleverer than I who can.

Saturday, 30 May 2015

When we first viewed this property, pulling into the parking bays, we saw loads of children playing on the large green in the culdesac. Smiling faces, bikes on their sides and a mum who'd come out with a pitcher of squash, cups and biscuits for the masses. I'd not stepped into the terraced house and already I knew I wanted to live here. As we shook hands with the estate agent just outside of the property, I was already planning on purchasing a storage bench we could put at the front so that we could watch the girls play on that green, while James and I shared a bottle of wine in the sunshine. I was sold.

Of course by the time papers were signed and we'd moved in, summer was nearly over and James was still living away at least 5days a week for work. If he was home for a couple of days biweekly that was pretty good. Most of the time it was just the four of us girls, Isa, Mels, Gin and Me. Ginny who I worried the most about, with regards to the move, was not as shaken up by this move as she'd been with others in the past. Being able to step out of our back gate and cross the road to the common must have been a dream for her.

We could walk to duck ponds she so loved in just a few minutes and drive to nanny and grandad's house in under 5. It took us less than 15 to walk to the town centre and Melody would be able to scoot to school in September, the same school her dad went to when he was her age.

It was a dream for me too. I lived so much closer to my friends and James and I would walk past the church we were married in, hand in hand, every time we went for a drink at our local. My girls would have happy summers outdoors in the sun while I cooked dinner and would watch them from the large window facing the green. We'd barbecue while the girls paddled in the garden and then ate at their mini picnic table wrapped in towels while we'd dine on the patio one. If only I never had to wake up. If only I could live in that dream.

Dreams are funny things. The other night Ginny spoke to me. Excitement shone through her face as she managed the words she'd desperately wanted to get out for years. We were on our back patio after a barbecue. She smiled, we all did, Melody hugged her and she kept on, saying a word and looking around to make sure it was hers. I could feel my heart swell with joy when I suddenly heard a scream. The scream was out of place, it didn't fit our joyous surroundings and it wasn't welcome, but there it was again. That's when I realised it wasn't real, that's when I remembered putting the girls to bed and rolling into my own without managing to read a page of my book out of exhaustion. The swell in my heart turned into an ache and I opened my eyes.

The scream was now an audible cry, "maamaaaa" but it wasn't Ginny's. Isa had rolled out of bed and was sat on the floor with her arm stretched towards me as I entered to room she now shared with Melody. I scooped her up and shushed her. I rocked her and kissed her forehead, then I placed her back into her bunk, put her doll 'peepo' back into her arms, and tucked them both up. I stroked her hair and sat on the edge of her bed, stooped over because of the bunk. I know I shouldn't because of my spinal injury but I want her to feel safe, to know I am here.

The cadence of her breath lulls and I know she has gone back off to dreamland. I kiss her forehead. I thank god that her grommet insertion was successful and that she is making excellent progress with her speech now that she can hear. I wish it could have been that easy for Ginny and immediately I feel guilty for taking hearing impairment lightly. I remember the struggle to get Isa's surgery put through and the frustration she felt for not being understood. Her frustration was just as real as Ginny's, we were just lucky it was temporary. I try to sneak off the bed in a semi ninja stance and when I see Isa did not wake from the bed's creek, I step on the child sized chair at the bedside, lower Melody's blanket and kiss her forehead too. How she can sleep the way she does, I will never understand. Not even in the deepest of winter could I imagine disappearing under my duvet without the feeling of asphyxiation creeping over me. I shudder. I replace her blanket, step off the chair carefully and step out of their room.

I stare at Ginny's door. The house is silent which is rare to say the least. I want to have a look at Ginny, to feel her hair, brush her cheek, but do I risk it? The chance of sliding her safety lock to open waking her when it's possible that if it doesn't she'll be facing the wall and far from my reach up in her loft-bed? I Reason with myself saying that Ginny has slept very well this week and that Amber is sound asleep so I could always lay with her a while to settle her if she did stir, and I slide the latch and wait. Nothing.

I slowly open the door and tiptoe in, towards the head side of her bed and stand on her child sized chair. She is facing out and suddenly it is worth the risk of waking her because her little hand is near the edge and I can hold it. It is warm, as always, and I feel my heart warm before the ache returns. I stare into her beautiful face and know that she may never speak. My dream was just that. She is eight, nearly nine, and I know that the chances of her developing speech after 8yrs drop drastically. I feel a tear roll down my face and I squeeze her hand slightly. I kiss two fingers on my other hand and gently place them to her lips before taking a deep breath, letting go of her hand and tiptoeing back out of her room.

I pull the door shut, slid the catch and lean against the door for another moment as I feel my chest begin to tremble. I reach my room in a few quick strides, grab a pillow and cry. I grieve. I grieve for Ginny. I grieve for her sisters. I grieve for myself and for James. I think of the way Melody asked if Santa could bring Ginny a new voice box for Christmas and of how she often prays for Ginny to be able to play with her and Isa. The way she pretends to be Ginny's voice when she asks for things she thinks Ginny might like. It makes my grief worse. They say you finally get grieve once you receive a diagnosis but it's only one of the many times you will.

I feel my chest heave and I know I have to calm myself so that I don't wake my mom downstairs, visiting for the summer to help with the girls. I hear Amber beginning to stir and know I must not be doing a very good job, or maybe I am and it's just time for a feed. I'm reminded of how I never really know if I'm doing that, a good job. I lift my head, take a deep breath, blow my nose, wipe my face and look at Amber.

She's kicked off her covers and is smiling at me. I can't help but smile back. She is so beautiful, but what's more, she is such a miracle. I had such a dreadful pregnancy last year and there were many things that could have led to her not being with us today. In the end she was only two months premature but breathing independently from birth. She was so small, is so small, even though she's more than three times the baby she was born.

Her hearing tests were clear but what if? What if it happens to her? What if she continues to develop normally and then one day she stops? She stops and she regresses? I don't know if my heart could bare it. I try to shake the thought, the feeling of unease our elephant brings with him when he creeps up and takes over. I reach a hand out to Amber and she grabs my thumb. She babbles, kicks her feet and smiles even bigger than before and I just have to hug her. I lift her up and kiss both her cheeks, her little hand still clutching my thumb and I somehow manage to feel blessed. I want to squeeze her but I don't want to hurt her so I kiss the top of her head, rearrange the pillows on my bed and nurse her.

Her eyes smile as she feeds. I know I am lucky to be able to nurse her, that not everyone manages while others do not wish to. It's worth the hunger and the exhaustion, to know that even though my body turns on me during pregnancy, it allows me to provide my children nourishment. After she finishes I continue to hold her close. I feel her chest rise and fall, I smell her skin, I hear her breathing. My love for this child, as for my others, has no bounds. I know I would do anything for her. I rearrange the pillows, lie back and drift off to sleep.

In the morning the sky is grey, the air smells of rain and my joints ache but I am thankful. When the sun is out all the children rush out to play on the green. They ride their bikes, make up games and laugh carelessly as children do. Many of them look around Ginny size/age or younger and it hurts to watch them. The joy the sight of them brought me to at the start now pulls at my heart. They do all these things Ginny may never do. They play and make sure their younger siblings feel included. They have friends. When it rains I do not see them out. It makes it easier, if only slightly.

I can not sit outside and watch Melody and Isa play unless Ginny is secured in a room with a camera and I can watch her on a screen next to me, or she is out with carers. Melody is younger than most of the children anyway but occasionally a couple of the kind, older girls, welcome her to play and say they will keep an eye on her. On those days I watch from the kitchen window and feel bad for wishing for rain. I watch Melody smile and jump about, and the girls put flowers in her hair and I still wish it could be Ginny picking the flowers and adorning her little sister's head. I wish it could be Ginny but I do not wish the other children away, I wish she could be their friends, that she could have friends, that they would knock at the door and call on her to play and that she would rush and ask me if its okay. I accept that it's just not the way it is and so I try to feel happy when they ask if Melody can play.

I often worry about whether because of Ginny's condition other parents won't/don't invite Melody over to play or us to join in on days out. I know it's silly but I can't help it. Especially when I hear/see that close friends have all gone to do something and we only hear/see that they have after the fact. I think I'd prefer it to be that they just didn't like me. School tells me that because Ginny's autism has such an impact on Melody it does affect her ability to make friends. That many times the other children may believe her to be a bully but I have seen her bullied and I've seen her innocently not understand what is going on and laugh at herself because she hasn't realised. She is a very emotional child and school has been great with trying to help steer her acceptably. I know that it's not Ginny that has made her emotional, that Ginny has made her compassionate and caring. That she's inherited my headstrong bossy nature. I wonder if I should tell the school she is emotional because it's in her DNA? Because of me?

Having a child like Ginny I have to especially watch what I say to everyone. I worry at all time the kind of things they'd feel necessary to pass on social services and am reminded of Ginny's case manager quoting James as saying that I am crazy and hormonal when pregnant when he flippantly said it was nice to have baby home and not have to deal with crazy pregnant hormones jokingly. Some how things like this are documented and those documents become apart of my life so I have to watch everything. When I was unwell and not at all satisfied with the care that was being provided to Ginny, instead of looking to improve said care, agencies tried to say it was in fact my fault because of my attitude. Apparently reporting a list of failings on my daughter's care and telling carers what is and is not an appropriate way of dealing with Ginny is a poor reflection on me.

Many people have asked I have not been writing and while I usually respond saying that there have been so many things going on in our lives that there just was enough time, that is only a part of the truth. A part of me fears that my honesty on reflection of what last summer was like for us while I was unwell could be another document to be filed away negatively. It often feels as if unless reflection on the system is positive then the system would prefer for it to remain buried or risk burial. I know that I am not alone in feeling this way. Unfortunately I know many others who feel the same.

In just a handful of days it will be a year since my spinal injury. The fact that I've experienced aches there all week is yet another reminder of the terrible summer we had as a family, yet also a reminder of how far we've come. A reminder of the fear I felt when the jolt of pain surged through me and I thought I had surely lost Amber, and of the fact that I hadn't. That we made it through with the help of friends and family, and that we've now had Amber with us for 7months. That now James is home more than he ever has been, thanks to his new job. That the girls are happier than they've ever been. That Ginny is now being medicated for ADHD and that it has made a massive difference to her ability to concentrate. That it's resulted her being on new language development target for the first time in years. That even though the likeliness of her developing speech has dropped, the possibility that another communication system may be successful has risen. That we don't need carers at home like we did then because I'm not bed ridden. That we've made it through, that we're blessed.

Don't forget, you can help me promote awareness by sharing this blog and making a donation towards my charity trek through

Wednesday, 22 April 2015

Thank you so much for sending your wonderful photos and inspiring blog to us! I shall forward your photos and blog to our World Autism Awareness Team at waaw@nas.org.uk so that they know how brilliantly you’ve done so far too!

I hope that the trek goes really well! I’m sure that all of your friends and family are extremely proud J

Thank you so much for the amazing work that you’re doing raising awareness and funds for The National Autistic Society, enabling us to provide information and support for more people and families living with autism.